Ona Albizu lives in Spain

I live with Myalgic Encephalomyelitis, a disease that too often strips people not only of their health, but also of their voice and their credibility. I have seen how patients are harmed not just by the illness itself, but by systems that misunderstand it, minimise it, or place it under frameworks that erase its biological reality. These experiences are what drive my commitment to ensure that people with lived experience are not treated as passive subjects, but as essential partners in all decisions that affect their lives.

My advocacy is rooted in a deep ethical conviction: that every person has the right to appropriate, evidence-based care, and to be treated with dignity and respect. This is why I dedicate so much of my work to challenging harmful psychosomatic narratives around ME and to promoting biomedical, patient-centred approaches that reflect what we actually live through.

I advocate both within international networks and in small, patient-led groups, often supporting people who have been marginalised, misdiagnosed, or even psychiatrised simply for being ill in ways medicine has not yet fully learned to understand. Real change cannot come from isolated efforts alone, but from building collective knowledge, solidarity, and accountability. My contribution is to help ensure that lived experience is recognised not as anecdote, but as evidence — and as a necessary force for change.